Tag Archives: support

Message #Dblogweek

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Eek! It’s #dblog week2016!! I haven’t written 5 blog posts in the last 5 months an now I have committed to 5 in a week!  But there are some excellent topics this week so here goes…

If you don’t know about #dblog week, check it out here. There are many many bloggers signed up and there will be a boatload of amazing posts to read over the course of the week. 

Here is the first prompt this week:
Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

I am here for many reasons but the main one can be summed up in one word: connection. My desire to connect with others living with diabetes goes all the way back to my diagnosis. My dad’s brother has been living with type 1 diabetes since 1960. In march 1997, as I lay in the intensive care unit the day after my diagnosis, slowly coming out of DKA, he came to visit. In just one look from him, I understood both how sorry he was that I also had to live with with this for the rest of my life but also how relieved he felt that now someone else actually understood how he feels.

It literally took that one look from my uncle to know that I didn’t have to do this alone and that it would indeed be harder without others who truly understood. I started looking to connect with others relatively quickly. It did help that the internet already existed although there was very little in the way of valuable information about actually living well with diabetes at the time. The first message boards and forums were starting to appear too so at least there were ways of finding others to converse with.

Over the last 19 years, true to this desire to connect with others, I’ve been both member and founder of local support groups, and have frequented a lot of on-line diabetes spaces for both diabetes and celiac disease. And as in life, each chronic illness took turns in which got more on-line time. But once the main learning curve of celiac was covered, I’ve definitely been more actively involved in diabetes related support on-line and off. The online forum that became my diabetes “home” on the internet for many years was the Diabetic Mommy forum. Many of the women I met there have become real friends, whether or not I have met them in real life.

A particularly bad bout of diabetes burnout hit me when my second daughter was about 12-18 months old. It was after several years of trying to maintain pregnancy blood glucose levels and by that point I was busy with raising my family and going back to work and I had less time to take care of my diabetes, let alone talk to others about it. When my A1c came back about 2% over what I wanted it to be, I realised that I needed to take action and for me, that was re-connecting actively with my D-family (OK, and also actually checking my BG levels, but honestly, chatting with others helped me check my blood sugar!).

So I started actively participating in tweetchats, not just passively reading them the next day. And although I had been an avid blog-reader for years, I started to reply to some blog posts and connect with the blogging community. The whole rise in blogging had passed me by since I had exactly what I needed in support at the time – around diabetes and pregnancy. I love the learning and the “me too” feeling that came with reading of tweets and blog posts, but I knew from experience that contributing to those conversations was just as important to me on both and emotional and a diabetes management perspective.

The more I connect with other people with diabetes, whether through direct twitter conversations, through reading blogs, through participating in Facebook groups… the better I feel and the better my diabetes behaves. Not to say there aren’t ups and downs (obviously), but I guess what I’m saying is that the connections I have made by being active in this community have helped make living with diabetes a little easier to deal with. So I’m here to find support and hopefully to give some as well through sharing my story and connecting with others.

 

#dblogweek 2015 – Favourites and Motivations

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And for my second post of the day… to at least attempt to catch up on #dblogweek! The topic today is “Favourites and Motivations”. After only a year of blogging I had a hard time picking a favourite bit of my blog, so I’ll share with you some of my motivation for being here.

I have understood from the day of my diagnosis how important it would be to connect with other people with diabetes. It all started as I lay in the ICU with bruises up and down both arms from all the IVs and artery lines that the doctors had placed with difficulty, the night before. But I was already feeling better 18 hours after diagnosis and the symptoms of my DKA were clearing up quickly.  Only close family were allowed into intensive care but I was very glad to see my uncle, who had by then been living with type 1 for 37 years.

I saw his concern for me and his sadness that someone else in the family would have to live with diabetes from now on. But I also saw his relief at no longer being alone in this and felt a connection with him that we had never had before. I hadn’t been able to adequately describe to anyone until then exactly how horrible I had felt in DKA. How unbelievably dry my mouth was, for example. No, not like when you’re really thirsty, more like when there is no saliva left. At all. But I didn’t need to explain it to him. He knew. He had been there.

So it was never really a question in my mind. If I wanted to live well with this (and I did!), I knew that I had to find peers to share stories, to compare notes, to support and to be supported by.  I joined an online forum while I was away at university and when I got back to Toronto after a few years, I found a group of women through the local chapter of the Canadian Diabetes association who became my core support group for a number of years.

I continued to participate in a few online forums, especially the Delphi “Diabetic Mommy” group. That group has been a lifeline through preparing for pregnancy and dealing with diabetes through pregnancy and motherhood. I have met only a few women from that group in “real” life, but I consider a number of them to be good friends. I also was very active for a number of years on a Celiac disease forum. The learning curve is so insane when you first go gluten free, that I don’t know how anyone does it without some support online or off.

A few years later, as the first D-blogs started appearing, I became an avid reader. But I think what held me back at first from starting my own blog was that I don’t love to write. I knew could respond to forum posts with supportive and well-informed answers, but I think I was a little intimidated on some level to create my own content rather than responding to others. So for years I put it off. But I have come to realise that as a diabetes advocate, it is important to have a personal space on the web to be able to share ideas in a more open space than what you can find in a forum or Facebook group.

I still find it a little scary to put myself out there but knowing the support I have found and have been able to share over the years of connecting with other PWD, that is motivation enough to share my thoughts with all of you. Sharing my story certainly helps me deal with my own diabetes and celiac disease and if just one person finds comfort in what they read here, my effort is worth it. And that motivates me to continue.

#dblogweek 2015 – Keep it to yourself

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The second topic of this #dblogweek is “keep it to yourself”.

Sometimes it’s hard to draw the line between what to share and what is best kept private. In general, off line and online, I share pretty openly about my diabetes – usually things that will help me and my own diabetes management or that I think could help others in the community. I don’t have hard & fast rules about what I won’t share publicly online but there is definitely an automatic filter on sharing some of my “deepest darkest” feelings or secrets – so much so that I’m not even sure I could articulate it here.

I have an introverted nature and for years I followed diabetes related blogs and twitter handles but preferred to share my own diabetes story in the relative private space of forums. But 3 years ago when my diabetes burnout had reached an ugly peak, reaching out to the more public diabetes online community and getting involved more actively played a huge part for me in finding balance.

But since I started sharing my diabetes story more publicly online, I have certainly learned about consequences of sharing. This hasn’t necessarily led me to “keep it all to myself” but I have had to work on how I deal with comments and judgements that can and do crop up and throw me a little off balance.

An example : Last September, I was fortunate enough to be able to try out the Freestyle Libre flash glucose monitoring system. I was excited to try it and excited to share my experiences in anticipation of this new technology hitting the European market. My first 24 hours on the Libre was a bit rough. Not because of the device, just because, well – diabetes.

RoughDayLibreDexwm

I hesitated to share this photo because of the actual graph but I was excited to show how well the Libre and Dexcom lines compared so I posted it on twitter.

The following day, someone posted my picture to a diabetes Facebook group as it was among the first on the internet comparing the two devices. At first I was amused to find my picture in a place I hadn’t put it. Then came the comment “Interesting diabetes management…”. I would have expected my doctor to be a little alarmed at that particular graph but I’ll admit that I wasn’t prepared to deal with the judgement from others who deal with diabetes every day.

As I said, that day was a hard one. I took less insulin than usual, set temp basal rates, did the same amount of activity as usual, ate more carbs than usual, including about 4 full-sized juice boxes and yet my blood sugar just kept dropping.

I don’t regret sharing the photo because it was exciting to be a part of the Libre trial and for me a big part of that was comparing it to the CGM technology that I already used. But this experience and a few other times where I have seen not-so-positive replies to things myself or others have shared in the online diabetes space have certainly taught me to be prepared for all possible reactions on what I decide not to keep to myself. It is therapeutic to share and make connections with others who “really get it” and it’s important for each of us to think about and find our personal threshold in terms of what we keep to ourselves and what we want to share.

One of the amazing things about the diabetes online community is that there are enough of us (with different levels of openness) that we can almost always find someone else who we can connect with. It is important however that we each remember to respect each other for sharing our stories rather than placing judgement on what is shared.

I want to become a runner again

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I discovered running at the age of 9 thanks to a wonderful coach who volunteered at my primary school. She was great at encouraging everyone, no matter what their natural talent was and empowered us to find our own strengths. I was never a fast runner but that didn’t matter. I learned to love running because it made me feel powerful. (Plus, the cross country team at school was the one team with out tryouts – everyone was welcome!) I ran less in my early university years because I was sick a lot (with what I now know was undiagnosed CD and then undiagnosed diabetes).

After my diabetes diagnosis, I got very serious about exercise and went to the gym 4-5 times a week. But I didn’t take up running again for about 3 years. I found running particularly tricky in terms of blood sugar balance. I really struggled with lows at first and trying to prevent those post-run lows was one of my main motivations to get an insulin pump. I wanted to have more control on my insulin doses to be able to run more often and longer distances without sacrificing stable glucose levels. In that first year on a pump, I ran my first 5k race (in a decade), my first 10k race and my first half marathon. I was hooked. Over the next 5 years I did several 5 and 10k races, 4 more half marathons and the big prize: one marathon.

I was super proud of my accomplishments and even prouder of how well I was managing to balance my running AND my diabetes. Then life got in the way of running. I was busy. Planned a wedding. Bought and renovated our home. Had two kids. Anyone who has done it can confirm that balancing pregnancy and diabetes is like a marathon in itself!  So during those years, my runs were sporadic at best.

After my second daughter was born, I wanted to get back at it but I had loads of excuses to delay. I breastfed for a long time and wasn’t sure how to handle the bouncing lactating boobs. My 2nd was not as great a sleeper as my 1st and I was chronically exhausted. When I went back to work, figuring out work/life balance was particularly stressful for me. All of these are probably reasons I should have used to start running again, but I let them work against my desire to lace up my shoes.

There was also one factor that was entirely diabetes related. When I was marathon training, I only had to worry about me and my diabetes. In the meantime, my family had become my top priority and it was hard trying to prioritise diabetes management and my own fitness into that mix. Plus, a new fear of exercise lows had wormed its way into my brain. I just didn’t want to have to deal with extra lows on top of everything else so the simplest solution was not to exercise!

But I had gained some kilos after having lost all of my pregnancy weight. And I know how good regular exercise is for physical and mental health and how good it can make you feel. So bit by bit I gathered the courage over the past year and started running again. Slow. Steady. Easy pace. I’m not out to win races, but then again, I never was. I gathered motivation where I could find it. I installed Run Keeper on my phone. I increased my goal for steps on my pedometer. My husband and planned our weeks so we knew who could run when. I tried running first thing in the morning before breakfast and was amazed at how stable blood glucose levels can be when exercising on an empty stomach and with no bolus-on-board.

But there is one thing that has recently boosted my confidence and my desire to actually become a runner again (because even though I’ve been running more on than off for the last 10 months I still haven’t quite reached a point where I feel “legit”).

Here in Paris we have a “Café Diabète” once a month. It’s a laid back support group for people with diabetes. Family and friends are welcome too. Each month there is a different theme and last month it was diabetes and sports – not just physical activity, but actually taking things to the next intensity level. Of the people who came, one did 5 marathons this year; another had recently attempted a 100+km trail race. I loved hearing theirs stories, their motivation, their tips on balancing food, exercise and blood sugar while putting their minds and bodies to the test.

I have never let diabetes hold me back from anything I wanted to accomplish. And I have run one marathon so I know I CAN do this. But sharing the goals, the struggles and the successes with others who are striving for similar things brings a whole new level of motivation. I’ve been running more consistently since our Café Diabète a few weeks ago and I feel really good about it. I’m not out to run 7500 km in 9 months or to become an IronMan (woman?). What I would like to do is solidify my exercise routine and I know that running is the sport for me based on how I feel after coming in from a run – even if it’s only 5 or 7 km. And I will make sure to surround myself with the support and motivation that comes from others who are in the same boat. I want to become a runner again for myself, but also for my daughters to grow up seeing the strength that comes with physical fitness.